Tuesday, 25 July 2017

I feel extremely privileged to support the patients who take the brave step to participate in clinical trials - Sam Corlett

Sam Corlett, clinical research nurse in the Melanoma team 

Sam Corlett
As a clinical research nurse I’ve often been asked what my role is and what a typical day involves. Firstly, there is no such thing as a typical day as a research nurse. The main focus of my role is to ensure the safety of the patients who are taking part in a clinical trial using a new drug treatment. 

My colleagues and I support the patients from the moment they are asked to consider a clinical trial to the point in time when they have completed the study for whatever reason that may be. 

Patients can ask for, or are asked to consider clinical trials at various times throughout their treatment; this could be at diagnosis or after other treatments have stopped working. I get involved at the very beginning by discussing the study with the patient and give them a patient information sheet which has full details of what to expect if they enter a clinical trial. 

Sometimes this happens in the clinic or it can be done via telephone after the consultation, but it is often both; it is important to ensure the patient does not feel coerced at all. 

My role is to ensure they receive all the information they need to make an informed choice about the best treatment path for them. This means I need to have knowledge of not just the trial protocol but also the treatment they would receive if not on a trial. There is no limit to a number of questions I get asked and what is important to one patient may be different to the next patient.    

Once a patient has made a decision to enter a clinical trial I plan with them the next steps. 

These include various screening tests such as scans and blood tests that we do at The Christie and sometimes tests at other hospitals, for example eye tests. This can take a lot of co-ordinating to ensure the least number of visits for the patient. I am constantly keeping the patient informed of what is happening, for example the results of tests.

Screening is done to ensure the patient is eligible for the trial and to ensure that they can receive the trial drugs safely. Not all patients who consent to a trial enter one, they may have a blood test out of allowable range for example, which means they cannot enter a trial. 

Managing their disappointment when this happens can be challenging, especially if they have come to The Christie specifically for a particular trial. 

As a centre specialising in melanoma treatments, patients can come from far and wide. 

From the outset, I ensure they are aware that being considered for and consenting to a clinical trial is no guarantee that they will receive treatment. 

Communication is essential in my role, not just with the patients but with all the departments that support research at The Christie. I work closely with the radiology team to request scans and with the pharmacy team to ensure they have the drugs required and that the prescription is ready.

When all the checks have been done and a patient accepted onto a trial, I then schedule the patient for their treatment. This might be in our dedicated clinical research facility or in the main chemotherapy unit depending on the treatment. The Christie has a strong research culture which is evident throughout the organisation, within all the different departments. 

As many of the trial drugs and treatments are new, not all the nurses at The Christie know how to administer them, how they work, or what the side effects are. That’s why I am also a nurse educator. I use my specialist knowledge of the trial drug to help other nurses in the Trust learn about them.  

Being a clinical research nurse in melanoma has increased my knowledge not just of melanoma as a disease and how we treat it but also how new treatments are introduced into the NHS. 

The mantra of a clinical research nurse is ‘If it isn’t written down then it didn’t happen!’ which means paperwork – lots and lots of paperwork. 

I’m sure most readers have seen the annoying piece of paper that often gets in the way in a packet of paracetamol. Until I became a clinical research nurse I never realised where that came from. All the toxicities the patient experiences are documented, along with every drug they are taking both before during and after taking part in the clinical trial. This information is entered into databases by every hospital taking part in the clinical trial across the globe and once a drug becomes licensed that information becomes the annoying piece of paper in the drug packet. 

Reviewing the patient with the medical staff at every visit to the hospital means I can ask how they are feeling and what symptoms they have had, any new drugs they have taken and ensure that they know how to manage side effects in order that they maintain a good quality of life. This means we have collected the information required for the clinical trial and this can be entered into the database by the clinical research administrator with whom I work really closely. 

Being in a consultation with a patient when they hear good news, like a scan showing that the treatment is working, is an honour. But along with the highs come the lows. It’s all part of my job to support patients and their families when the treatment is no longer working. This is difficult and never gets any easier, particularly if I’ve known the patient for months or even years!  

Any patient taking part in a clinical trial is taking a leap into the unknown; it is a trial because we need to find out if the drug is more effective than existing treatments. Although many patients hope they will benefit personally from the trial, many are also doing it for altruistic reasons in the hope that other people after them will benefit from the research. 

As a research nurse I feel extremely privileged to support the patients who take the brave step to participate in clinical trials and helping them through the decision making process to the end of the trial.

Any patients who are suitable for a clinical trial may be approached by their clinician or a research nurse to discuss a study. Patients can also ask their clinical team at any point if there are any trials they may be eligible for. Anyone with a general enquiry about clinical trials at The Christie can email informationcentre@christie.nhs.uk 

Thursday, 13 July 2017

A second chance - Julie Scates

Julie Scates, Christie patient

Julie Scates
In March 2014 I was 39 and my big birthday was approaching. My partner Steve and I had lots of great plans, but little did I know that a terminal primary peritoneal cancer that had spread to my ovaries, liver, bowels, diaphragm and omentum (the layer of peritoneum that surrounds abdominal organs) was going to thwart those plans and change my life forever.  

I am from Belfast in Northern Ireland and live there with Steve and three children now aged 24, 18 and 13. I always had a hectic family and work schedule up to Nov 2013 when my health deteriorated.  

I was classically misdiagnosed with irritable bowel syndrome and then ovarian cysts. I struggled with pain for the next few months with multiple stays in hospital. Eventually I had the shocking diagnosis that I had an advanced and aggressive stage 4 cancer. My world was turned upside down. I was taken to theatre for surgery and an attempt was made to remove the tumours. It was unsuccessful and the prognosis was very poor giving me just weeks to live. I asked for a second opinion but they had already done this during my surgery and it was agreed that it was too advanced to proceed.   

My immediate thoughts were how ‘how am I going to tell my children that I am going to die’ and ‘how can I leave them without their mum’.  Panic stricken we knew we had to work fast if I was going to have any hope. I remember thinking at the time if only I could have 6 months to try and make a plan for my children's future and prepare them for life without me.  
It sent my partner Steve into overdrive. He spoke to Target Ovarian Cancer who recommended The Christie in Manchester and another UK hospital.  We also researched clinics in Germany, USA and Mexico. I was desperate and we needed to move fast. We sent them all my scan and pathology reports. They all came back with treatment options and a plan, but only we could decide what path to take and that was difficult as we knew nothing about this rare form of ovarian cancer and Dr Google was deadly. 

It was a telephone consultation with Professor Gordon Jayson at The Christie that convinced me to fly to Manchester to meet him. He believed he could help but needed to see me. I was on a flight within a few days for an appointment in his clinic. I walked in frightened, in excruciating pain, covered in a rash from an allergic reaction to the pain medication I was on, but fiercely determined to do whatever I needed to. 

Within minutes and I mean literally minutes, his expertise and compassion was evident. He is a humble man but you can tell how passionate he is about his work and the patients he cares for. I look back on that first appointment and how my mind was firmly made up, Professor Jayson and The Christie was the right choice for me. He gave me hope in what I had been told was a hopeless situation so I went home to Belfast, packed a bag and my treatment commenced within a few days.  

Like myself, many people consider travelling to Europe and beyond for treatment but I feel blessed to have found an oncologist in a specialist centre like The Christie within the UK. I was a complex case and no doubt a challenge for any oncologist. I've had chemotherapy, radical surgery, more chemotherapy and have been able to access two different clinical trials that have not only prolonged my life but have given me a good quality of life with my family for the last three years and continue to do so.

During chemotherapy
It was daunting at first for my family as they worried about me travelling for treatment but some of them have accompanied me on my chemo trips and they have seen firsthand the care I receive when I'm at The Christie and can reassure everyone else at home that I'm in great hands. I have also made special friendships with other patients at the clinic.  

I may travel many miles to get to The Christie but I'm always made to feel at home. Each and every department I visit is always so upbeat, caring and accommodating - the clinical trials team, scans, ward staff, porters, blood test nurses, x-rays staff - too many to mention individually as I've been all around the hospital!  Everything I need is under one roof here. I was even able to get my wig and headscarves on site!  I have referred other women from home and other parts of the UK who have ovarian and other types of cancer to The Christie for a second opinion and they too have experienced the excellent care and expertise available.   

My clinical nurse specialist Catherine Rogers has been a rock throughout this. I was struggling with the incurable disease and terminal illness terminology that had been used to describe my cancer previously. She advised me to think of it as a chronic illness and this has changed my mindset and helped me cope so much better. The Christie team has supported my mental well being as well as my medical needs.     

I have had to reprioritise my life and fortunately have been on many adventures and travelled to amazing places since being diagnosed with cancer. I'm determined to LIVE with cancer, making the best of every day, rather than letting it dictate my happiness.  

People ask me how I cope with the travel from Belfast to Manchester, but the care and expertise I get from The Christie outweigh the effort it takes to get there. Only when you have walked a journey like this can you truly understand the positive impact on you and your loved ones of being able to have complete faith and trust in the medical team whose care you are under, and that is why I will continue to travel.  

All through this journey I've always looked for the silver lining and Professor Jayson and The Christie have been that for me. He recently told me in his own words that it was a privilege to be able to look after his patients but I, like any other women I have met in his clinic, feel privileged to receive the care provided by him and his wonderful team.  

Thank you.

Monday, 3 July 2017

I have never met someone who was as brave, and positive, and inspiring as Chris Hartley - Kirstie Binns

I have never met someone who was as brave, and positive, and inspiring as Chris Hartley

Kirstie and Chris
It's hard to explain the bond created when you meet a group of random strangers and decide to camp with them at a festival... and then continue that tradition every year after that. Each year the bond is stronger and the friendship grows... It's a beautiful thing really, to go from strangers to basically family, and the good times and memories will stay with you forever.

Unfortunately not every story can be smooth sailing...

This story is about a boy named Chris Hartley.

Chris joined our Download Festival family four years ago in June 2013, and although only meeting us for the first time, within a couple of hours he was one of us, and that weekend was one of our best. 

In  April  2014 Chris was diagnosed with osteosarcoma bone cancer, and started his treatment on 16th June. This was the week after Download 2014… Chris came to the Download festival and sang louder than ever before. We all made sure Chris had the best week to get him through his treatment.

Chris had surgery in September 2014 to remove a tumour from his humorous bone, and was fitted with a titanium replacement. Then he underwent a gruelling 20 weeks of chemotherapy which included being in hospital over the Christmas and New Year break.

Chris finished his chemotherapy at the beginning of February and was looking forward to finally getting his life back! Unfortunately an MRI scan at the end of February showed that there was a suspicious lesion in the soft tissue of the same arm as before. A biopsy confirmed the worst. Chris then had further surgery to remove this new tumour.

Finally thinking that our friend had won his battle, we started getting ready for Download 2015! Everyone was ecstatic that Chris would be able to attend in good health, and there was excitement in every text message sent.

Unfortunately with only two weeks to go we received another heart-breaking message from Chris. Once again the cancer was back in his arm. This time the doctor decided the best course of action was amputation of his right arm and shoulder blade.

Chris was given the option of the Tuesday before Download festival, or the Tuesday after... Being a rock 'n' roll hero, Chris came to Download and we partied harder than ever, and we really did have the best weekend of our lives, all of us together as one big family.

The surgery went well, and Chris was incredible throughout it all. He soon adapted to life without his arm, even smashing it on his videogames by using his chin! The support from his amazing family, his mum Sue, dad John, and sister Amy, and his devoted girlfriend, Hilary, made sure Chris kept a smile on his face.

In August 2015 we received yet another blow. With only two months since his last surgery, Chris was told his cancer had resurfaced underneath the scar from his previous surgery, in the soft tissue in his chest wall. A CT scan then revealed that the cancer had spread to his lungs. This time the doctor heartbreakingly informed Chris that it was a matter of slowing the cancer down, rather than curing it.
The decision was made that Chris’s treatment would continue, but this time at The Christie in Manchester. Chris was due to start a new course of chemotherapy on 21st September.

On Saturday 12th September, whilst on holiday, Chris’s right lung collapsed. Once home, Chris was taken to The Christie where he had a CT scan. This revealed an estimated 6 litres of fluid sat on his lung in his chest, which they started to drain, and left Chris with one working lung. On Monday 21st September Chris had to have a drain fitted for his left lung, as that had also started to fill with fluid.

On Wednesday 23rd September a few of us from his Download festival family went to The Christie to visit Chris. There was an arts and craft room led by a lovely woman. We got Chris out of his room and we all spent a few hours laughing, and joking and cutting and sticking. Unfortunately that evening Chris’s right lung collapsed again, and due to problems with his breathing, the decision was made to move him to the critical care unit.

On Saturday morning Chris was taken for keyhole surgery to try and relieve some of the pressure on his lungs. Once in surgery what was presumed to be fluid causing the difficulties for Chris, turned out to be a tumour. Chris was kept sedated and put on a ventilator to assist him with his breathing. Due to the discovery in surgery, and the extent of the tumours, Chris’s family were notified that he would not likely come round.

That night Chris’s mum Sue rang us, to tell us to all to get to The Christie, and spend some time saying what we wanted to say to Chris. Our Download family live all over the country… London, Carlisle, Northamptonshire, Manchester, Selby, Saltburn… but we all got in our cars and got to The Christie.

On Monday 28th September Chris passed away peacefully in his sleep, surrounded by his family and all his closest friends, listening to his rock playlist. We all got to spend time with Chris, and I cannot begin to explain our gratitude to his family for letting us be a part of it. They are our family as well now. Also a big thank you to the staff of The Christie for letting us be there all day, and explaining everything to us, we wouldn’t trade that day in for anything in the world.

Chris was an extremely intelligent, caring, funny, music loving rock n roll legend, and I am lucky to have amazing memories and the privilege of calling him one of my friends. I cannot put into words how amazing Chris was, especially how he dealt with everything… with a smile on his face. Even through all of his treatment he still managed to get a first class honours degree in Chemistry. All of us would say the same, we have never met someone who was as brave, and positive, and inspiring as Chris Hartley.

A person like Chris is not the kind of person you forget. The level of care and the efforts of the staff at The Christie are also not something you forget. Along with Chris’s family and the Download group I decided that his legacy must live on. The best way to remember Chris, and to say thank you to The Christie, was to start fundraising.

I started to email The Christie, everyone I spoke to was incredibly helpful, and there was no end of support for me. Chris’s mum Sue was also in contact with staff at The Christie, and they passed on information about a research project into osteosarcoma, which meant that the money we raised could go to that research through The Christie.

So first we planned an event, a Halloween party called creepy carnage. I decided to shave my head. We organised a venue, with live bands, a raffle, an auction and a buffet for over 100 people. Chris’s mum Sue shaved my head in Chris’s memory. The whole day was a success, I ended up bald, and we raised £5,535, with £2,990 of that going to The Christie.

This was the first of many fundraisers to come. Sue has held cake sales, and tombola’s, and has raffled off football tickets.

Sue also had T-shirts made with the details of how to text our JustGiving page, we’ve worn them to gigs and festivals and gained quite a few donations through them. We have worn them to all the gigs Chris had tickets for, so his smiling face was there with us at every time. Most importantly we wore them to Download festival 2016.

On the Sunday of that weekend, a band called Shinedown played and we as a family scattered his ashes at our meeting point at the main stage whilst they played a song two of us had performed at his funeral. We raised over £200 from the T-shirts alone that weekend, telling everyone who asked Chris’s story.

Later in the year we all signed up to do the Manchester half marathon. To look at us all you would laugh at the idea we could do a half marathon but nevertheless 17 of us signed up. We all trained hard and set up a JustGiving team page so all our efforts could be combined. Despite ending up stiff and sore from the run, all 17 of us crossed the finish line and we’ve raised over £6,300. Our total fundraising efforts are now over £15,500!

We now plan that every year there will be at least one big event, and as many little fundraising activities as we can manage. Chris’s legacy will live on, and we will keep on fundraising for The Christie. I know that there is nothing we can do that will bring Chris back, but knowing he’s laughing at us all from up there, with a smile on his face makes it feel like is he is with us, fundraising and still fighting cancer with us every step of the way.

To donate to The Christie please visit www.christies.org/donate.